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Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics
Univ Exeter, Egenis, England.ORCID iD: 0000-0002-3143-8430
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.ORCID iD: 0000-0001-6149-5498
Univ Cent Lancashire UCLan, Sch Community Hlth & Midwifery, Preston, Lancs, England;Liverpool Womens NHS Hosp Trust, Merseyside & Cheshire Clin Genet Serv, Liverpool, Merseyside, England.
Cardiff Univ, Sch Med, Cardiff, S Glam, Wales.ORCID iD: 0000-0002-1200-9286
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2019 (English)In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 27, no 2, p. 169-182Article in journal (Refereed) Published
Abstract [en]

Technological advances have increased the availability of genomic data in research and the clinic. If, over time, interpretation of the significance of the data changes, or new information becomes available, the question arises as to whether recontacting the patient and/or family is indicated. The Public and Professional Policy Committee of the European Society of Human Genetics (ESHG), together with research groups from the UK and the Netherlands, developed recommendations on recontacting which, after public consultation, have been endorsed by ESHG Board. In clinical genetics, recontacting for updating patients with new, clinically significant information related to their diagnosis or previous genetic testing may be justifiable and, where possible, desirable. Consensus about the type of information that should trigger recontacting converges around its clinical and personal utility. The organization of recontacting procedures and policies in current health care systems is challenging. It should be sustainable, commensurate with previously obtained consent, and a shared responsibility between healthcare providers, laboratories, patients, and other stakeholders. Optimal use of the limited clinical resources currently available is needed. Allocation of dedicated resources for recontacting should be considered. Finally, there is a need for more evidence, including economic and utility of information for people, to inform which strategies provide the most cost-effective use of healthcare resources for recontacting.

Place, publisher, year, edition, pages
NATURE PUBLISHING GROUP , 2019. Vol. 27, no 2, p. 169-182
National Category
Medical Ethics
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URN: urn:nbn:se:uu:diva-376808DOI: 10.1038/s41431-018-0285-1ISI: 000455983900001PubMedID: 30310124OAI: oai:DiVA.org:uu-376808DiVA, id: diva2:1291069
Available from: 2019-02-22 Created: 2019-02-22 Last updated: 2019-02-22Bibliographically approved

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